Monday, October 27, 2014

Waiting for the General Surgeon. We are finally getting around to fixing her hernia. It just hasn’t been a priority. It’s from one of her chest drain tubes. We are scheduled for Dec 5th for tubes, hernia repair, and sedated ECHO. Bella loves selfies!

As a Kickstarter backer, Bella received a song Miss Rachel made of the Christmas story – she LOVES it!

Monday, October 13, 2014

Pulmonology went well. He acted a little scared of Bell. He knows her old Pulmonologist. He does things a little differently. Rather than just sitting around waiting for the next virus that lands us up in ICU, he’d rather her be on a couple of daily steroids to be proactive. They are meds we had weaned from, so we’ll try that. Especially with this new environment and a real winter coming! I told him my philosophy of no hospital care and he told me his - get to the hospital, get stable, then recover at home, but he did tell me he was fine sending her home on O2. So we’ll see. It makes me nervous when Bella makes a doctor nervous. They tend to overreact then. We’ll give him a shoot and see how it goes. I did like that they do have same day appointments. So if I’m considering taking her in to the hospital, I could see him first. That is nice and would never have happened in Houston.

Friday, October 10, 2014

Cardiology was great today!! They do things a bit differently here. We did the EKG and then spoke with the doctor. After that he did the ECHO himself while I held Bella in my lap. Yes, she fought me, but he was able to get it done! In Houston they had kicked us out of the ECHO lab and told us all future ECHOs would have to be sedated. So I was thrilled he got the ECHO! Results were great too! Valves are behaving, just mild leaks. Arterial pulmonary pressures are on the high end of normal - fantastic!!

Bella, my miracle girl! Who would have thought that sick girl who was on the verge of death would be giving results like these!??! So excited as she continues to do so marvelously well!!

Well, maybe I’m too close to see you clearlyOr is it now my role to simply believe?You’re just one of those mysteriesThat may never be solved in timeBut you do — you do — you shine

And Sammy will do what Sammy will do when Sammy is ready to do itAnd Trevor will do what Trevor will do when Trevor is ready to do itAnd Lucy will do what Lucy will do when Lucy is ready to do itAnd they’ll do it in their own time